outpatient surgery, autism style

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Friday, 5:30 am

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Brooke and I have checked into the Day Surgery unit at Children’s Hospital for a 7:30 procedure. She needs a total of four baby teeth pulled and there’s no possibility of doing it without anesthesia. I’m terrified, but holding it together miraculously well, if I don’t say so myself. Luau will be along after getting Katie ready and over to a friend’s house for school.

We’ve moved ever so slowly from the reception area to the first waiting room to the second waiting room and now to the official inside holding area. We’ve already educated the first nurse who came over and read quickly through her chart, scanning her finger quickly over PDD-NOS, skipping it and only reading aloud ADHD.

She looked shocked when she asked if there was anything else she should know and I said, “No, the autism really is the biggest issue.” She went back and read it again, still confused.

“PDD-NOS stands for Pervasive Development Disorder,” I explained. “It’s a form of autism.”

“Oh, yes, she said,” attempting to assert her familiarity by inadvertently doing precisely the opposite, “Not Origin Specific.”

I didn’t correct her, but instead explained that anxiety and sensory issues would be our biggest challenges that morning. We talked a little bit about what that meant – mostly just put us in the quietest place possible and don’t pick her up or touch her without warning.

As the morning wears on, we find that Luau’s long preparatory conversation with the hospital was largely useless. I make mental notes for next time: Don’t say PDD, say Autism. Forget about ADHD, they need to know about Pervasive Anxiety. Know that they’re full of crap – and it’s for the best – when they say that The Child Life Specialist will ‘meet you at the door and guide you through the process’. When she shows up more than an hour after our arrival to find Brooke in her hospital jammies calmly watching her favorite Teletubbies DVD, her response is to sing-song a loud hello and ask if Brooke would like to make Thanksgiving crafts with her. Um, no.

As the holding area begins to fill up with children, it gets tougher. A toddler cries and Brooke shouts in response. I join her on the gurney and turn up the volume on the DVD player. Together, we watch Laa-Laa and Po, Tinky Winky and Dipsy. I usually can’t stand those guys, but I might just be coming around.

The anesthesiologist comes over to talk about what he has planned. He is patient and kind. He ensures that I understand everything that he says; he asks my opinion; listens to my responses and is extremely receptive to my questions and concerns.

Together, we decide that it will be necessary to give Brooke a sedative before beginning anything else. I ask him to bring a detached mask that we can play with while we wait so that I can at least attempt to desensitize her to the idea of putting it on her face. I express my fears about her waking up agitated or panicked. I tell him that come Hell or high water, I do not want her waking up without me. He promises they will come get me as soon as it is safe to do so and assures me that he’ll have an anti-anxiety ready to administer at the first sign of distress.

The rest of the team begins to assemble. The doctor comes over to check in with us. A second anesthesiologist brings the mask and asks Brooke if she’d like it filled with a yummy smell. Brooke half-heartedly chooses strawberry. She just wants to watch her show.

Her tension level is rising. Too many people. Too many questions. Danger Will Robinson.

I begin to interject. “I don’t mean to answer for her,” I say, “but she’s calm right now. Engaging her is causing her more stress than not.”

The second anesthesiologist smiles at me. “Don’t apologize,” she says, “That’s perfect. Exactly what we need to know.” She backs off and Brooke happily rejoins the Teletubbies.

I’m not convinced that the sedative is working. As the time draws nearer, she looks as wide awake as she did before. She wants no part of the mask. She’ll hold it, but putting it on her face is a different story. I am braced for disaster.

It is the head nurse who speaks up. “Mom,” she says, “we’re going to do things a little differently here. You stay right where you are, OK? You’re going to come in with us just like this.”

Luau points out that I have yet to put on the scrubs that she’d given me twenty minutes earlier. She makes it abundantly clear that she couldn’t care less. She’s not going to upset the apple cart just to get me into different pants. I put the lovely paper hat thingy over my hair and we’re off.

We’re rolling through the hallways, Brooke in my arms, watching her beloved Tubbies. I am holding my girl, smiling up at doctors and panicked looking parents as we go, doing my best to pretend that this is all normal – just another day. I want desperately to take my girl and run.

When we get into the operating room, Brooke is startled by the stark white light. “I know, baby,” I say. “that’s a really bright light.” A nurse immediately flips it on the opposite direction and then switches it off. The head nurse looks at me. “This isn’t the way we typically do things around here, Mom, but we’re going to do whatever’s best for our girl, OK?”

If I weren’t on a gurney, I would hug her.

The next thing I know, I am holding the mask on my baby girl’s face. She tries to swipe it away, but I hold firm and tell her that she needs to keep it on her face for just another minute. I talk about the movie, still playing. “Look, baby,” I say, “It’s time for Tubby Bye Byes.” Oh God. There’s no way that she’ll be out in time. “Brooke,” I explain, “when the Tubbies all say goodbye, we’ll start the show again, OK?”

As the freaky baby sun guy begins to giggle, Brooke is out. I’m shocked. It happened so fast. The team asks me to lie back on the gurney so that they can pick her up and over me and transfer her onto the gurney set up for the procedure. Her body is limp and her eyes half-open. It’s wrong. It’s all I can do not to throw myself on her. Mama bear is struggling.

I kiss her on the cheek and a nurse I haven’t seen until now whisks me out into the hallway. She walks me all the way back to Luau, pushing me hard through the blur of hallway. I don’t resist. I never would have found my way back on my own.

Luau and I move back out into the reception room where we will wait for word that she is out of the OR.

I can’t breathe.

It’s 2003 and I have just given birth. My girl is being held back because her temperature is too low. I need my baby. Please, for the love of all things holy, just bring me my baby. She needs me. Please. Please bring me my baby. I can feel the itch of the morphine wearing off. Why aren’t they bringing my baby?

I walk out into the hallway and push my back against the wall. Tears stream down my face. I kept it together as long as I could.

Luau goes to talk to the nurses again. They need to know. Do not let her wake up without her Mama. She won’t have the foggiest idea what’s going on. I have to be there when she wakes up.

Luau brings me back into the waiting room. He reminds me that anesthesiologists have said that no one remembers that time when they first emerge, so we don’t have to worry – that even if it’s hard, she won’t remember a thing. He tells me again that when he had his wisdom teeth out he did Kung Fu in the waiting room.

I try to keep my voice even, but I know it sounds harsh. “They have no idea what people remember or don’t, Luau. They barely even understand how this stuff works. And what you remember or don’t is totally irrelevant. Brooke’s brain works differently that yours or mine or anyone else’s and heaven knows we have no idea what she is recording or how she will or won’t process it later.”

He leaves it alone. “Fair enough,” he says. He offers a cup of coffee. I just can’t. He heads down to the lobby shop to make sure we have something for Brooke to eat when she wakes up.

The nurse calls me. “She’s emerged from the anesthesia but she’s still sound asleep. Do you want to wait for your husband to come back up?”

I nearly drag her down the hall. “NO. Please bring him to us as soon as he comes back,” I say. “I’ll text him as we walk so he knows. But if my girl is waking up, I’m not waiting for anything.”

… to be continued

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27 thoughts on “outpatient surgery, autism style

  1. I think I could have written this post. Exactly 2 1/2 weeks ago, when Nell had 2 of her molars extracted. In the same hospital where my water broke at 24 wks. The same out-patient ER I spent her 3rd birthday getting a D&C for the miscarriage that wouldn’t “complete.” The same fear and trembling and flashbacks…

    Nell got a sedative first. She fought it like nobody’s business. She was NOT going to let anyone else control her and MAKE her sleepy. She writhed, and wriggled, and pinched herself back awake every time it started to make her drift off. She slurred her words and almost face-planted a few times, right off the gurney. But damn it, she stayed awake. Until they upped the dose…

    The nurse, as they wheeled her back to the OR, said to us while laughing, “so, this is how she’ll look first semester freshman year, drunk.” And I couldn’t help but think – in spite of the horror any mom SHOULD feel at the idea of her baby being old enough to leave for college, and then the horror of knowing that her baby might be off doing stupid irresponsible ( but totally typical ) things like getting drunk for the first time – from her mouth to God’s ear. Let her go to college. Let her have friends there who will take her places with them. Let her willingly go with a friend. Let her willingly put something new in her mouth, just ONCE… So I smiled and mumbled something that sounded vaguely like assent.

    She did just great with the surgery. She did just fine with the anesthesia. It was the stitches in her gums that did us in – the constant running her tongue over them till her tongue actually bled, and asking to pull them out. And so I did what any spectrum mom would do – I called her doc and had him talk me through removing them at home that night. The gauze was way easier to deal with, and the bleeding was minimal.

    And oh yes, there was a LOT of icecream!

  2. This takes me back to when my daughter was put under anesthesia for a MRI. I am sure curious how sweet little Brooke woke up. Mine woke up terrified and violent…so violent, in fact, she kicked me across the room into a stack of drawers that scattered across the floor. Suffice it to say, I never want a repeat of that day again. You are such a good Mama Bear.

  3. A year ago I had to carry Sam into the OR for a hernia surgery. Our medical team didn’t show nearly as much sensitivity as you’ve been given so far. I hope the second part of this story is just as positive and that Brooke woke up okay. Our biggest problem with Sam waking up is that it took longer than an hour and really scared me.

  4. This post brings back so many memories. We had to put Jeff under anesthesia when he was just 3 to have dental work done. that was back in 1988. It was so frightening and as we look back on it…..I wish I had the “guts” I now have to deal with some of the people, in particular an anesthesiologist who was covering for someone else because she couldn’t get there. He was not happy about that and we were in earshot of all of it. Fortunately, all went well and Jeff woke up happily and we got him out of that hospital ASAP. Lessons learned the hard way..we found our voices. You put it into words that we can relate to. Thank you. xoxo

  5. You are bringing it all back for this morning – I have been down this road too many times at Boston Children’s Hospital supporting my best friend and her son who has spent WAY too much time there. It never gets any easier but I am relieved that your experience was good (so far). Your little one has an amazing ability to fight through the anxiety – – just like her Momma. XO

  6. My son JP had anterior and posterior full spine fusion almost 2 years ago and I went through the same thing pre-op with him. We were never offered a sedative prior to walking into the OR (of course I requested it but was told that it was a 10 hour surgery and he would never remember it anyhow…. ya right!). I literally held his hand, with scrubs and gown in place, and walked to the OR. They had to hold him down as he was screaming “No mom, I am not ready, I am not ready…. just a little more time!” That was the worst day of my life! They held that mask on his face as he was screaming into it with tears running down his face (and mine). The nurse led me out to the waiting room just as quickly as you and I couldn’t breathe either. The worst feeling, to lead your child into having the discs in his back removed, a rib removed, rods, screws and wires inserted. Knowing this is going to happen while telling him he will be O.K. feels like the biggest lie I will ever tell. Autism causes so much anxiety but it is amplified when ALL of his senses are stimulated like that (the lights, the smell, the cold hardness of the OR). I laughed when they started talking about the flavor they could put in the mask… I told them we would be lucky if he didn’t puke into the mask, smelling it wasn’t even an option! Its crazy the little things that are HUGE when doing any procedure and dealing with autism. We have had tons of MRI and MRA’s, You try and tell the nurses and staff what works best but they always think they know better. I give the nurses 1 chance getting the IV in when they don’t believe me that the beautiful vein they are looking at in his arm will back up on them and its best in his foot. But eventually off we go with little tube hanging from his foot and a note in his chart that will never be looked at again. I can’t wait to hear how well Brooke (and you ) did coming out of surgery! Our children will never stop amazing us, because anything beyond ‘I Love You Mom’ is just a bonus! I already know that you both did well…. because you are both amazing!

  7. Wyatt had dental outpatient surgery this summer. When we arrived at the Montreal Children’s Hospital we met with a nurse to answer questions. She directed her questions to Wyatt and when I mentioned he was non-verbal she was blown away. Apparently this nurse, in a Children’s hospital had never heard of a nonverbal child with autism. I think she came back to this fact about 3 times during the interview. He woke up violently from the anastesia as well and then was terrified of falling asleep at night for about a month. Full.Meltdown. Every night for a month. He may not of remembered the surgery but he sure as hell remembered waking up scared and out of control in a scary place.

  8. When our dentist had to pull teeth from Mr. M, he said, normally he suggests a tranquilzer prior to the procedure, but for us it was a requirement for the patient. I just wanted one for myself also! The dentist is amazing with Mr. M, and I am so glad that we found him.

    At Children’s I always write “Aspergers (form of Autism). he knows he has Aspergers but NOT Autism. Please refer to it as Aspergers.” I haven’t had a problem yet, but sooner or later the kid is going to read what I wrote!

    I hope recovery went well, and that you have a HAPPY holiday.

  9. I love when a team (finally) gets it and rolls with it. I remember my first time in the OR with Nik, too. And, really, they ought to give mama’s a little snort of that gas, too, to calm our nerves. xo

  10. I totally teared up at what the nurse in the OR said. I have also found it’s better to say Autism as the lead in. When Cullen had his sedated MRI I had a wonderful nurse who called me the day before to explain everything and let me explain everything about Cullen to her. She was so great the day of the actual MRI. Unfortunately our EEG did not go as well. Looking forward to the rest….oh and nobody prepared me for how bad it all was waiting for the drugs to get out of his system

  11. 2 years ago I had to watch my sweet girl being wheeled down the hall to OR crying and yelling for me to come with her, and they wouldn’t let me. It is among the top 5 all-time I HATE F#$%ING AUTISM moments of my life. Yes, sadly that’s not even the worst, but it does make the top 5.

  12. It sounds like they made up for their initial mistakes by treating you very respectfully! That is great. My son has had anesthesia for dental work. They always let me be with him until he was out, but I never thought it possible to be with him when he woke up. I just knew from the ear-piercing scream that I could hear, and they’d get me pretty fast. He would scream until we left and then suddenly stop and be completely fine. I hope you guys are done with dental work for awhile!

  13. Soo hard. I can’t even imagine, I’ve never had to do anything like that and I hope I never will. I feel for you. Sending all my love and support. I hope you were both ok in the end. ox

  14. Your post reminds of my daughter’s experience. She was 3 and hadn’t been diagnosed yet, though we scensed that she wasn’t developing normally. She was scheduled to have her tonsils and adenoids removed. I, like you was terrified and held it together until the anethesia began to take effect. Holding my baby and seeing her eyes flutter and then close nearly did me in. It wasn’t until her body went limp that I lost it. Her surgery was successful and she recovered within a few days. I hope Brooke is doing well!

  15. Pingback: outpatient surgery, autism style « a diary of a mom | My Autism Site | All About Autism

  16. Major flashbacks here, my son had to have an MRI when he was four, to check out what the doc thought might be a tumor in his leg. I was just coming to grips with ASD when I had to face the possibility of cancer…my mind couldn’t even fully go there, it was just so surreal.

    Anyway, he also emerged from the anesthesia so violently that they re-sedated him with a different drug in the hopes he’d wake up more peacefully. That almost killed me.

    So even though it was an outpatient thing, they ended up admitting him for observation because of the complications. We finally settled him in bed, 14 hours after we first arrived for the MRI, when they suddenly decided he was OK enough to be discharged. At midnight!

    I didn’t want to wake my husband and 2-year-old to come get us so we were on the busy Chicago street trying to hail a cab when my son vomited again. The nurse at the hospital entrance basically said too bad, he’d already been discharged. Good times.

    The only bright spot was that our doctor let me know ASAP that the initial read of the MRI showed no cancer. He went out of his way to track down the radiologist to get the info so at least we’d know one way or other ASAP.

    I guess this is my long-winded way of saying I’m with ya on the experience, and whatever part two of your story brings, nothing would surprise me. Here’s hoping you are all resting and recovering quickly!

  17. My Dad ran the dental surgery clinic at Children’s for many years. As the grandfather of two children on the spectrum I know he would be very proud of how Brooke was handled. I will share this with him tomorrow.

  18. Loving this line right here… I need these words myself from time to time: I begin to interject. “I don’t mean to answer for her,” I say, “but she’s calm right now. Engaging her is causing her more stress than not.” Thank you for that!

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